Please help us to help our mother!

It is not easy to ask for support so broadly, also touching into the lives of people, who barely know our mother, but who may be able to empathize with her fight for her life.

But we really, really need everybody´s help to help our mother!!! It is truly necessary, if our mother should gain her life back. There’s nothing we wish for more than this!!!

Our mother has now been fighting for her life for 18 years!

See, it all started with hypermobility since she was born (and the genetics there of!) and with lax ligaments that are unable to keep her spine in a good posture and functionality. All this got badly exacerbated by the MCAS – the noticeable beginning of her illness.

And today this condition affects almost all systems in the body, including the hormone system, the immune system, the digestive system, the autonomous nervous system, etc., etc. - because it impacts on the brainstem (the autonomous nervous system) and on the spinal cord.

Cervical spine upright-MRI scanning in London

After 13 years of searching for answers and proper treatment, our mother travelled to London to Medserena Clinic with Professor Francis Smith. She had numerous upright-MRI scans. This is a facility that is not available to patients in Denmark!

The scans showed beyond doubt that our mother has so-called CCI/AAI (cranio-cervical instability and atlanto-axial instability) and a herniated disc high up in the neck. The ligaments, which are supposed to hold the spine together and hold the head in place on the spine, are simply too flexible and weak.

You could say that her neck and head are "loose". This means that the pressure from and movements of the neck are constantly causing irreversible damage to the brainstem, the nerves and the spinal cord. It causes strong pain and malfunction in many systems of the body, as well as various damage to the spinal cord and the brain stem. If her neck does not get stabilized, she will eventually end up paralyzed from the neck and down, and in worst case scenario she dies.

Our mother sent the scans and the report from Professor Smith to Dr. Gilete and Dr. Oliver in Barcelona, some of the world's leading neurosurgeons in this field. Through an online consultation, Dr. Gilete recommended that our mother should have surgery to fuse C0-T1 = the skull and the whole neck. He also advised her to get further diagnosed.

It is not possible for our mother to get relevant treatment or surgery in Denmark.

Cervical fusion surgery is dangerous, expensive and creates many new problems!

However, surgery to fuse the vertebras of the cervical spine is both complicated, risky and also causes major problems in future; she will be 100% unable to turn or bend her neck for the rest of her life. There are other discomforts and pains associated with this surgery, which should be an absolutely last option!

Other possibilities than surgery

Our mother has researched the situation and she has found that there are other, and less dramatic possibilities to be tried before surgical fusion.

Treatments with stem cells and a surgery for Tethered Cord.

Ultimately, if none of this helps comprehensive surgery would be the last option - but it has serious consequences. In the diagnostic report by Dr Gilete, who may perform the surgery (if that's where the path leads to) estimates that she must be operated from C0 to T1 = the skull and the whole neck. Amount: € 78,000 with the risk of additional expenses for additional operations. Excluding stay and travel.

None of the above examinations, scanning facilities or treatments are available to patients in Denmark.

There will always be unforeseen expenses and treatments in such extensive illnesses.

Additionally, our mother has started this Facebook group to help the fundraising

https://www.facebook.com/groups/1407205063298127

We, Kuno and Mico have decided to create this fundraiser. It is completely out of our reach to manifest (on our own) the huge amount of money that will be needed for our mother to get her life back.

We appeal to community and humanity at large to support us in helping our mother